IEP = Big Plans for Brycen

We gathered with Brycen's educational team a few weeks ago for his annual IEP and walked away with a brand new plan for our little buddy.  I didn't update immediately because we still had a few things to work out in the plan before it was finalized and wanted to be able to post about all of it at one time.  These are the main points that will interest most of those familiar with Brycen and his services.

1.  Brycen is progressing far faster than we could ever imagine.  This meeting reiterated how he is thriving being in the general ed classroom for part of the day with a 1:1 associate.  One line that stands out from his written IEP is "Brycen is learning some of the general education content at an age-expected pace.  Once he learns something, he is holding onto it."  So this is great news, right?!  Of course.  The next line is "His inability to attend to task and follow teacher direction will impact his ability to show what he knows.  An adult to help with keeping him on-task, restating directions, and to interpret his communication attempts will be necessary for Bryen to experience success in general education content."  So it's not what he is learning in gen ed that is a problem for him, but how he is learning it and how much help he needs to pay attention to learn it. 

2.  His communication continues to be a big area of concern.  We all know communication is a huge factor with all children on the spectrum...whether than can verbalize or not.  In Brycen's case, he is unable to verbalize but we know it's in there...just need to give him the tools like his "talker" and the I-Pad at school so he can communicate with us more and show what he knows.  Brycen will continue to receive speech therapy at school 40 minutes per week in addition to his time with the special education teacher and associates (who of course are constantly reiterating communication with him).

3.  He has come a LONG way with his writing skills.  While he needs complete assistance to come up with topics to "journal" about and typically needs prompts to answer questions using his "talker," he has the ability to write out every letter of the alphabet capital and lower case...with some modeling need for a few of the letters to get them correct.  He is struggling with writing within certain lines, spaces, etc...so he will continue with Occupational Therapy at school 120 minutes per month to finetune these skills using some special paper and tools. 

4.  Since his progression in the educational aspect is holding steady and showing no signs of regression over breaks, he does not qualify for the typical extended school year program.  BUT, the entire team agrees that he is most definitely at risk for regressing in the areas of routine and socialization with peers.  The team has worked out a plan to have him participate with a 1:1 associate this summer for 7 weeks, up to 6 hours per week, at the local YMCA program where he can regularly practice his socializing and have a routine that is similar to that of the school environment.  We are very lucky in that one of his regular associates is willing and able to do this so we know he will be in good hands and he will understand the transition better with her help.

5.  Brycen will participate in all grade-school testing like the other 1st graders (oh my goodness, my son is going to be in 1ST GRADE!!) with some exceptions to having no time limit and having an adult be able to assist him with filling in the answers after he comes up with them, etc.  Of course there are some things they are unable to do due to educational laws like read certain questions to him in the reading area of testing, but they will accomodate him as much as possible to align with his special needs.

6.  Lastly, this is what we might consider the biggest change of all for him.  It was agreed by the team that he is doing so well during a few areas of the day with participating and following directions that there will be times throughout the day where he will NOT need a 1:1 associate assigned to him.  These times will include PE, music class, and recess time...as well as some time here and there in the general ed classroom that doesn't involve specific learning times.  The day after the IEP in April, the team immediately implemented this part of the plan with phasing out the associate during these times.  Doing this the last few weeks of school will give the team time to determine if it will work out ok and spot any kinks in the plan.  To us, this is a huge step towards his independence!!  It shows just how much he has progressed in a setting with his peers and it also shows just how hard the associates/teachers have worked to get him to this point in these areas after just 9 months of school.  So far it seems to be going well...as these are 3 of the school setting he very much enjoys! 

So as you can see, there have been some major changes in his plan that mostly stem from how much progress he has shown over the last 9 months.  He enjoys school, enjoys his peers in kindergarten, as well as enjoys his friends in his special education room as well.  It seems like all of his teachers and associates also enjoy working with him.  Though we know he can be naughty just like any other 5/6 year old boy, he has so much determination to learn and have fun!  We are so proud of his achievements this year and are in awe of just how far he has come in the last 3 years since his initial diagnosis.  Thank you to all of those team members who have had a part in his life and pushed him to be the best he can be!  He doesn't like to be pushed outside of his comfort zone at first, but as we can see it is paying off in so many ways.

Congratulations, Brycen!!

Brycen has officially "graduated" from Occupational and Physical Therapy at the private clinic for his 5 year old skills this week!  Great news for him!  In Occupational Therapy, he has recently worked on fine motor skills in many areas, muscle tone in his arms, writing his entire name and his grip on the pencil, and identifying/writing his address & phone number.  During Physical Therapy over the last 9 months, he has accomplished learning how to pedal, steer, and used the brakes on his bike with training wheels, jumping on both feet, balancing and jumping on each individual foot, balance across a beam, kicking with each foot with aim, and a lot of other stuff.  While there are still some skills that other 5 yr olds can do that he can't, we have felt he has caught up enough to his peers that it was time to discharge him from these two therapies.  Brycen will continue with his three appts per week of private Speech Therapy as well as his Speech and Occupational Therapy at school. 

While this is great news for his development and for our home schedule (going from 8 therapy sessions per week down to 3 is a huge difference in time!), it still presents with some extra emotions for us.  The possibility for regression is high for children with Autism, and additionally for children who have already shown regression in their past development.  We aren't as worried about this while he is in school because so many of these skills are reinforced consistently throughout the day, but when summer comes it really worries us that he may "forget" some of these skills.  Luckily, we have the option to have him re-evaluated at any time if we would be concerned about any regression or when he turns 6 years old and any new skills for that age are not emerging on their own. 

Thank you to all of his therapists (and entire team!) over the last several years who have contributed so much to his progressing to this point!  Their care & obvious dedication to wanting to help Brycen achieve, and their continuous support to us as his parents are what made this possible.  We could NEVER have done it without them!

Brycen's Newest Accomplishments!

Brycen has made some small but positive strides in the right direction in many areas this last week.  He is doing well at handling the full-time school schedule and the increased therapy schedule.  The therapists even mentioned adding a 4th session on Friday mornings later in September but we've opted not to do this as he would miss some important parts of the school day at that time.  We're really having to make sure he is getting the "best of both worlds" by getting 1:1 therapy on specific areas and socialization/routine with the school.  We are currently happy with the schedule we have worked out with both places and we will soon be adding SCL home services two times per week soon which will help him work on more socialization and community skills like safety.

One of Brycen's new accomplishments this week is drawing shapes in the air!  He is able to do a square, circle, and triangle...and will make a noise with each line.  I think this is a combination of both therapy and school helping this progress along.  He has been doing this more often during mealtime..he'll stop eating and just start drawing in the air.  He is working on so many things in kindergarten that I am programming many more things in his device each week for the aides/teachers to use.  Most recently, kindergarten is working on sight words.  I can't believe my little boy is working on reading!!  They have only worked on two so far, and of course reading is a little different for him since he isn't able to verbalize much, but having it programmed on his device allows him to participate when the word comes up in the book they are working on. 

The second accomplishment this week came in physical therapy.  He is now doing two sessions a week overlapped with one of his other therapies.  The PT that is working with him is so energetic and eager to work with him.  It makes me so happy to see how excited he is to see his therapists each time.  Our main goals in PT is for him to pedal a bike, as well as increase his muscle strength with jumping and balancing.  He was able to do one entire pedal around on the bike this week during therapy!  We took him outside today to work on more pedaling (as his therapy was cancelled today due to the holiday), and he was trying really hard to push each foot around.  He is just having a hard time knowing to push the opposite leg next.  We walk behind him and touch the back of each foot saying push and help him get started, then reach for the other foot.  It's exhausting!!  His regular speech therapist returned from maternity leave this last week also and he was excited to see her!  She commented about how far he had come in so many areas in the last 5 weeks...which of course made me glow with pride. 

The 3rd accomplishment this week happened this morning when he was getting dressed.  OT asked me a week ago to bring in a zip up and button up shirt for him to work on.  He was doing so good at the zipping and buttons that they wanted him to work on it from the angle of getting dressed, but of course Brycen wouldn't wear the vests they have at the therapy place.  While getting ready this morning, I encouraged him to pull the zipper up on his shorts...and he did it!  He even held the bottom of the zipper to hold it straight like a pro!  He was also able to do the button with my help to pull the shorts away from his waist so he could see it better.  He fumbles around a lot, but he shows so much more willingness to do it now than he did just a couple months ago. 

We are so proud of his determination and eagerness to learn!  It's amazing how much he really takes in from his surroundings and eventually will surprise us with his new abilities when we least expect it. Here is a short video of part of his "therapy" session outside today where we worked on jumping up and down the small step in the front of the house. 

Moving AGAIN!

As most of you know from my FB page, Mike is being transferred to a new store already.  He was promoted to 2nd Assistant Manager (a new position that the company created about a year ago that only select stores will have depending on how busy and big they are) in a store that is almost 2 hours away from here.  We are so happy to be able to stay on the eastern side of the state though so we are still within 2 hours driving to both sets of parents!  Mike was only at this store for 9 months, and the kids and I had only been here for 7 months before receiving this news.  Just so you know, this short of time between moves is NOT typical of the company...it's usually more like 2-4 years, but when the company feels like they have found the right fit for someone to advance, they will move you when needed.

In addition to finding a new rental house (thank you to some old Fareway friends that are already in the new store that helped with this!) and of course moving our entire family and belongings, we also have the additional tasks of moving all of Brycen's services and therapies to the new town.  Some of you are familiar with what this all includes, but most of you probably aren't so I'll provide a "brief" summary of what my list right now consists of pertaining to Brycen ONLY:

• Brycen's Case Management will be transferred from Clayton County to Jackson County so he will have a new Case Manager to oversea his waiver services (respite, SCL, etc)
• Social Security will need documentation of our new residence and income changes (Mike receives a pay raise with the move as well as he will be scheduled more hours each week than he was as a full-time managment program employee) as that will all change.
• Respite services will hopefully stay the same with my old employer and my mom will stay as the staff if they will allow (they currently do not serve anyone in that area of the state)
• SCL services will still be through the CCO program and my mom as the staff...and I JUST received an email from the broker here in NE Iowa and she said she is able to stay with him also so I can cross this off my list besides having to change our residence and phone number with the broker and Veridian who oversees the payment to my mom for her hours worked.
• Therapy services (speech and OT) need to be located in the area...our current SLP at the hospital is helping with this and we just found a lead on a great place in the town.  Otherwise we will have to drive him at least 30 miles to a therapy clinic that works with pediatrics.  Cross your fingers for the local clinic to work out!
• Pharmacy change with his medications
• U of I genetics will need to be changed since we are under their care right now with testing
• Psychiatrist will either need to be changed or since she is located out of Cedar Rapids (she travels one day per week to our current area), we may just drive to continue to see her so we have one less change
• New physician needs to be found right away to transfer all of his scripts for diapers and therapy to new town
• Medicaid will need to be informed of his residence change.
• Activ Style will need to be informed of his residence change and provided with new script for his diapers
• Transportation company will need to be informed of his residence change and special approval required for reimbursement if we need to take him out of the county for any doctors or therapies
• Most importantly, his educational needs will be transferred to the local district including the new IEP that our current team worked so hard on these last few weeks so he will be in special education services, intergrated into the general education room with a 1:1 paraprofessional all day, as well as speech and OT included in his educational services.

Phew!  Of course I have another list that is just the basic moving things like insurance, utilities, credit cards, bank accounts, etc.  I know I've said this before but after looking at this list typed out, it really does make one think that having a special needs child and managing all of their day-to-day services is a full-time job in itself!  I love being involved in his services though and I am very grateful for the education and work experience I had prior to his regression and diagnosis so I know what needs to be done and how to stay on top of the basics.  It does make some of this a lot easier having 10 years of experience of working in the field...though no education or work really prepares you for the job of 24 hours of special needs, just like babysitting a baby for a few hours does not really prepare you for the 24 hour job of having a newborn baby. 

I'm trying to think positive about this move despite it happening so fast.  Each day I am finding more and more things that will be easier once we move such as the decreased travel time/gas money for Mike to get to work, to get Brycen to school, and hopefully to get him to therapy as well.  We already know one Fareway family in the area, as well as Mike has extended family that live within a half hour of the new town (thanks to his aunt/uncle that are letting him stay at their house over these few weeks until we move!!) so we feel that we will have some immediate support in the area.
 
I'll keep everybody updated on the changes with Brycen as they happen...and of course let you know how he accepts the actual move and many changes in his life as he adjusts to all of this!

A glimpse of what lies ahead for Brycen in the coming year!

I've had a rough week emotionally. I actually chose to stop reading things about Autism this week and am taking a break from the "in your face" articles and websites that just make me feel sad. While I know we are doing our best for Brycen within our living area and financial means, I don't think I will ever feel like I am doing enough for him!

I took the opportunity this week to talk to his speech therapist at the hospital about increasing his sessions. Currently, he goes to therapy two times per week for 1/2 hour each with Mondays being a co-treat session with OT and Speech, and then Wednesdays is only with speech. I had been reading about children going to hours and hours of therapy a week (and I'm not even talking about the ABA stuff, just OT/Speech/PT and other therapies) and it made me feel the need to re-evaluate where we were with him. He obviously has made some progress over the past few months and with the addition of his communication device, I feel like we need to start pushing forward and testing his ability for more. The speech therapist agreed to extend those two sessions to 45 minutes each and we did discuss possibly adding on a Friday session. She needs to get a doctor's order for the increasing frequency of seeing him (insurance purposes of course!), and is going to discuss having OT do the same and see him two of the days instead of only one each week. Talking to her reminded me that it wasn't just me that was holding him back in session time, but it's his ABILITY to do that. He has a hard time with attention span and staying focused, and while we feel this may be getting better, we know it will always be an issue with him so he will never be the child that can withstand hours of therapy a day. I have read that some people say that their children can withstand this much therapy because it's also play time for them...but Brycen honestly prefers to play alone or in his own way. He likes for us to play certain games with him, but he can be very content to stare out the window at cars or turn his bubble/sensory toy over and over for an hour. Who am I to say that he can't do those things he enjoys and instead be required to do more hours of things he just doesn't always seem happy to do for that timeframe?

In addition to attempting to increase therapy, we are also preparing for his IEP on April 26th. Mike might have to work due to a co-worker being on vacation that week, but I am so confident and happy with this school district that it doesn't even scare me to go at it alone. Pretty much everything that will be discussed that day has already been touched upon during his conferences and other meetings/paperwork over the last 6 months. It is so nice to work with a school that takes education and special needs so seriously!!

My mom, Brycen, and I went to visit the Special Education classroom yesterday afternoon after Brycen returned home from pre-school. While Brycen will be placed in a general education room for the majority of the day in kindergarten, he will also have a Special Education teacher that will pull him out for specifics (and she is also his teacher for Extended School year this summer). After meeting and observing the teacher on Friday, it is obvious that she knows what she is doing and loves what she does! She even has a therapy dog that comes to school every day with her! She explained a basic schedule of his day while in kindergarten and it's split between group time/recess/meals/centers/music/PE with the general education room, and then a few times throughout the day where he is pulled out to work on specifics like their new pilot program, Teach Town, and writing/math. We are pushing for an associate to be with him also throughout the day for many reasons including he is not even close to potty-training and still wearing pull-ups, as well as needing help with transitions, social skills, and other settings that could bring on behavioral issues.

He will continue to have individual sessions with the school's Speech Therapist (though the minutes allowed each month will be decided at his IEP in a couple weeks) and is currently being re-evaluated by the school's Occupational Therapist. As you probably remember, he was evaluated back when he started 3 year old preschool in the old town, but as he is getting older it's becoming apparent that he is behind and needing help in more and more areas. The old school said he didn't have enough issues to warrant them funding OT during the day which is why we seeked out the hospital over there to do some OT sessions. We continued the OT session at the hospital in this new area, and are now just getting around to asking the school to do the re-eval so he can possibly see an OT throughout the month in school too.

While I do believe he is behind in areas that Physical Therapy would work on, I know those are the least of what he needs to work on. I may look into an evaluation through the hospital in the future, but I really just want to concentrate on him being able to complete daily living tasks that require his fine motor skills and of course increase his communication skills as much as possible.

I look forward to what is to come with Brycen over the summer and next school year! I always hope for growth and more understanding of what he needs on a daily basis, but I really just want him to be happy, healthy, and able to have opportunities available to him to learn and adjust. He has an amazing team of people surrounding him!!

Communication and Therapy Updates

Brycen has been doing a great job of communicating more through his actions for what he wants! A good example today is that he wanted to watch a video during rest time and I got busy in the kitchen and forgot to start it for him after laying his sister down. In the past, he would get upset and just yell until I figured out what was wrong. Today, he nicely brought the DVD remote to me in the kitchen and when I asked him if he wanted to start his video, he said "sss" (his approximation for yes) right away and ran back into the living room! I was so proud of him and he was so smart with bringing me the remote to tell me what he wanted.
We've also noticed more signing during his therapy and at home, as well as increased sounds when he is trying to imitate a word. The speech therapist has noticed he is attempting to sign "help" while also saying "ep" and wanted me to check with the speech therapist at the school to see if they have been working more on this. He is so much more consistent with this than he was several months ago!
During Occupational Therapy, they have been attempting some very basic music therapy through head phones. He refused to wear the headphones before this and would typically throw them down. They decided to use his favorite toy in the room to help with this which is a mechanical Cookie Monster that opens it's mouth for Brycen to put a cookie in and then he closes it and says stuff like "yum, yum. Me like cookie." Brycen LOVES this! The speech therapist uses this toy to get him to ask for more cookies to feed Cookie Monster...and now they are using Cookie Monster to demonstrate to Brycen how to wear the head phones.
On the 3rd session of doing this earlier this week, Brycen grabbed the headphones off of Cookie's head and put them right onto his with no prompts!! Then they would take turns the rest of the time and it got to the point that Brycen wore the headphones for about 30-45 seconds! That is huge progress for him...and he didn't even seem to mind the music that was playing through them. I'm not quite sure what this music is supposed to do but I think it's supposed to help with desensitizing his ears since he is afraid of loud noises like alarms, hair dryers, and vacuum cleaners.
Anyway, that pretty much summarizes what we have been noticing the last few weeks with Brycen. Slow but steady wins the race!!!

Speech & OT update!

I absolutely love our new therapists over here! They've decided to approach Brycen's speech and OT together on the days he has school so as not to overwhelm him so much...they call it co-treat for these 1/2 hours.
Do you remember me sharing about a year or so ago that Brycen was having difficulty with understanding the PECS pictures? I was having to take my camera around and take pictures of all the places we typically go, his various toys, and clothing items, etc. He has come so far in this over the last year that all he uses now are PECS pictures and he actually can identify them the first time he sees them!
PECS pictures are what we will be using in our future Go Talk at home so it's necessary for him to understand them. Today at his therapy appt, he did great at using the device appropriately and was very enthusiastic to tell them "more" with the appropriate picture! He also responded well to transitions and they definitely kept him busy!
Here is a summary of what a co-treat session looks like as I'm sure many people that read this blog have never participated in speech or OT sessions:
First of all, they ask him to choose one activity on the Go-Talk. They typically have at least one of the 3 pictures as a non-preferred activity. He chose to "swing" today, so the OT therapist put him in the swing and went side to side, back to front. Every 30-45 seconds, they would stop and ask Brycen what he wanted. He would then push "swing" again...and the Speech therapist would then request him to push "more" first. If he doesn't do it, she then does hand-over-hand with him and offers praise over and over. They do this series multiple times. Then they push the "all done" button to let him know swinging is over. They ask him to go to the table where they show him new pictures and he chose "play-doh" today. The OT then worked with him on fine motor skills by putting little army guys in the play-doh for him to get out. Praise, praise for each one. Then they ask him what he wants to do next...and he pushed "play-doh" again, but the speech therapist encourages to push the "more" also. They do this multiple times. Then they go back to a different sensory activity which of course Brycen chose to swing again. After second time swinging, they went back to table and worked on making a turkey craft with him. This worked not only on his choice of colors, using scissors, or glue but also worked on him recognizing the PECS for these while the OT helped him with these fine motor skills. She focused a lot on his grip today with the colors.
I love these sessions because they keep him busy, follow a great sensory diet for the 1/2 hr of back and forth, not too much of one thing, but encouraging communication with the Go-Talk and also working on transitions. They give me such a great example of words to use with him, how to praise him, and how to keep him transitioning without becoming upset. I'm not sure how else I would learn these things if I didn't have the therapists to teach me how. So thankful that insurance will pay for these sessions!

Wilbarger Brushing Technique

The new Occupational Therapist introduced the brushing technique to us last week and gave us instructions and a brush to take home and start using with Brycen. The goal of this technique is to help him with his sensory cravings, as well as to encourage restful sleep and eventually decrease aggression/help him work through agitation and frustration. I've been trying to find a good website to add to this post, but I just can't find one that I like that really explains the technique well enough. Wilbarger Brushing has been around for a long time and though it does not have science backing it up, many parents agree it has helped their child on the spectrum in so many ways.

My philosopy is it only takes a few minutes each time and doesn't cost us any money or require us to travel and put him out of his comfort zone, so why not?!

The technique uses a therapy brush with lightweight and soft bristles. This is the condensed version of what the technique is like: you start with firm pressure up and down one arm, move to the back up and down, and over to other arm. Then you move to each leg up and down, and then the bottoms of the feet. It is best to do on bare skin, but of course over the clothes is ok too if the child will accept it better that way. The protocol calls for doing it at least every 1 1/2-2 hours all day long.

At first, Brycen cried and threw the brush the first few times. Then he slowly would allow us to brush one small area (he actually wants to brush his head and stomach with it himself, though the technique says these areas are supposed to be off limits). After 5 days of doing it (I showed my mom how to use it over the weekend when we were gone), he now runs to us when we suggest getting the brush. He holds still and it seems like he is really craving it now. The drastic change from Thursday's reaction is phenomenal! I read that if the child doesn't respond like this within a week, then it's not the right therapy for them.

I have shared over and over how aggression is a huge issue with Brycen. In the long run, we would like him to be able to "tell" us he needs the brush when he is starting to have those feelings of frustration and anger, so we can help him work through those feelings before it goes to far. I have read that this technique decreases a lot of the tantrums that come along with classic/non-verbal children with autism. I have also read it takes A LOT of dedication to ensure the "sensory diet" is consistent day in and day out, which means everybody that cares for him has to be on board. My goal right now is to complete the technique once in the morning before school, have school do it about mid-morning, then shortly after he gets home during rest time, then again late afternoon, after dinner, and then again at bedtime. So far, so good and it was so great to go back to the OT yesterday and share his progress with her...and then to hear that he tolerated it so well for her during his session too!

Insurance and their control

I never in a million years guessed it would be this hard to start Brycen's speech and OT again after moving! I knew we had to complete a new evaluation here, but I guess I figured we could start immediately and he would be out of therapy two weeks at the most since we are transferring to the exact same services here.
Guess I was wrong! It's amazing how much insurance can rule your life in these instances. Yes, we have Medicaid as a back up for speech and OT, but the hospital won't act on that until it has been run through our primary insurance first. We are one of the lucky ones in that our private insurance covers a decent chunk of the first 20 appointments of the year for both types of therapy, and then Medicaid sees both therapies as a necessary treatment for Autism so they will then pick up the rest of the tab. There is no way we could afford to pay $125+ per hour of therapy that he needs out of pocket.
Anyway, so for the last three weeks, we have had to just sit back and wait for BCBS to "pre-authorize" a service that he was already receiving before at a different hospital. Transitioning Brycen to a new therapy place with new people is hard enough as it is (hence the interesting evaulation we had earlier in October where he gave the therapists a clear picture of the not-so-good days), but then to keep him out of it for over a month is just outrageous! If it wasn't for the fact he was in school right now and for us actually knowing how to encourage ways for him to get out his energy through a partial sensory diet or how to encourage sign language and choices, he could have definitely regressed in these areas in a month's time. This is just another reason why it is so important for parents to be actively involved in their child's therapy because you just never know who or what will have control over that time and how long it can be on hiatus.
So, the good news is the pre-auth came in the mail over the weekend and the new clinic called me today to set up his first OT and speech with them on Thursday. The bad news...starting a new routine with him and transitioning him to this is probably not going to be easy:(

Dealing with Medical Insurance

Before I go into any details I want to let everybody know that we are VERY lucky in that Brycen qualified for waiver services and Medicaid insurance shortly after he received his official dx from U of I! Shortly after Brycen qualified for the Intellectual Disabilities Waiver which includes the Medicaid, respite and SCL services, this waiver was full and now others are on a waiting list. The other three waivers that are available depending on the child's dx are also on waiting lists which is not fair to those parents that are battling to get insurance to cover necessary appointments, testing, and therapies. One 1/2 hr speech appt is billed at $77! Can you imagine trying to afford to pay for those appts out of your pocket...much less usually 4-5 appts a week are needed?!

So how our insurance works is that every dr appt and therapy appt are run through our private insurance (Blue Cross Blue Shield) first and then Medicaid will pick up the amount that is left. We were initially told by the therapist and a doctor at U of I that BCBS would not cover any of his therapies, which is what made getting Medicaid so important to us. With Autism, studies have shown the earlier a child receives consistent intervention, the decrease in services they will need later in life and during school. Why the heck would insurances NOT cover this then? This has been a hot subject in various state's governments lately.

Anyway, surprisingly to us...Brycen's speech for May WAS COVERED by BCBS! I'm not sure of all the details, but my understanding is that prior authorization is needed and since Brycen's doctor gave an order for the therapy and because his records and treatment plan demonstrate that he is not talking and far behind other children his age, this was the reason it is covered. The extent of coverage is not known at this time, but we are guessing about 20 appts each calendar year which we know Brycen will have burned through in two months, but Medicaid will pick up the rest of the speech appts which is AWESOME and they currently pay the 10% coinsurance for each of the first 20! The OT is the same way in that they will cover 20 appts each year and since he started later with OT and only goes twice a week, very little will need to be paid by Medicaid for this year.

We are some of the lucky ones and compared to some other states, Iowa is far better with more waiver spots and also other ways of getting Medicaid before a waiver spot if income is low enough. Of course, Iowa is not the best state...but I have been told that moving to MN would really decrease the amount of services we would get and we would be placed back on a waiting list. That is not acceptable as we definitely can't afford to pay out of pocket for the therapies he needs without going far into debt...what hard-working family could? The reason I need to work is to pay just the bills we have now and the groceries and diapers we need now...there is not extra money to pay for that cost, much less I couldn't work more hours to help with that since I would need to be available to take him to all the therapies and appts. I really feel bad for those families that are battling this right now in Iowa, all other states, and across the world that aren't qualifying for insurance that will cover what is needed for their child. As if these parents of children with autism and all other life-long disabilities don't have enough to handle!

Next on the agenda: Creating a Sensory Diet

When I first heard the term "sensory diet," I thought it had to do with feeding your child a variety of textures, colors, smells, etc. But after a few OT appointments under our belt and a little more reading in "The Out-of-Sync Child" book, I have found out what a sensory diet really means...and I COMPLETELY agree that we need to include more of this daily.

In short, it means we need to include a variety of sensory input activities based on Brycen's mood and cravings. Overall, Brycen is hyperactive, so we need to encourage some quiet activities like playing with a tub of rice to encourage a slower activity or having him swing so he is getting that active sensory input he is craving, but is doing it in an orderly and calming way.

The activities will need to vary and be available to change as needed due to his change in moods and sensory needs that go along with sensory processing disorder.

Check out this link I attached that explains this more in depth and all the different areas that a sensory diet includes! It's a lot of information to take in, especially when I know it will need to be addressed daily to ensure his sensory needs are being met...but to combine this with all the therapy appts, another toddler to keep entertained, housework, and the responsibilities of mine and Mike's jobs...Wow, it's definitely going to take some time to get into a routine of incorporating these examples every day as he needs them!

http://sensorysmarts.com/sensory_diet_activities.html

Occupational Therapy: A whole different world for us

I, of course, have heard about occupational therapy for many, many years in my field of work, but until yesterday and since I started reading "The Out-of-Sync Child", I just never knew how much OT's actually work on and how much these things can affect a child.
I listened with awe yesterday to the questions and comments from the Occupational therapist that evaluated Brycen and will be working with him. While most people think of fine motor skills and learning to adapt to the world around them when someone mentions OT, I learned there is so much more to this.
If you have watched Brycen eat, he drools almost at every meal and snack. Did you know that could mean his oral motor muscles are not developed enough and need work to become stronger?
Brycen has always had an issue with choking on food and gagging. She said the reason he may only chew his food a little bit is because his muscles in chin and mouth get tired of chewing so he just swallows, hence the choking. Most people can leave their almost 4 yr old child while eating and go to another room, but we can't do this for fear of this exact reason.
While Brycen seems to be on track with fine motor skills, they will be testing his grasp and the way he uses utensils, etc to see if that needs any help.
They are also looking at the reasons Brycen chooses to eat the foods he does and refuses others, whether it is color, texture, temperature, etc. So now I am keeping a food log for the next few days with what he is given, how much he eats, etc. This will also be helpful for nutritional purposes as Brycen is very low on the percentage of his weight compared to his height and head size.
I am very grateful for their help in these next areas of loud noises, teeth grinding, and oversensitive to various touch such as during a haircut or during brushing teeth. She said they are going to work on desensitizing the areas first with different techniques. With the teeth grinding, we are going to try to replace this with another sensory seeking item. We have noticed he doesn't grind when he is doing a lot of jumping, running, or at the park climbing, but he will frequently grind during meal times or when he seems "bored" and "stimming." So obviously, he is not seeking some kind of oral sensory, but needs something else to "distract" him. I hope that makes sense!
So, I knew Brycen had some sensory issues, but I guess I never realized how much there is to work on in addition to his speech and communication, appropriate play and socialization, sleep issues, aggression, and many more. The list of things we work on every day just keeps growing and I am learning so much about why he does the things he does and what we can do to help him in these areas.
We are now tacking on two OT appts per week in addition to our 3 speech...luckily they will be back-to-back appts so we don't have to drive there more than 3 times per week...but it's just exhausting thinking about it!

Our "out-of-sync" child...sensory issues

It doesn't take a rocket scientist to see that Brycen has many sensory issues. While Sensory Processing Disorder is separate from Autistic Disorder, most children on the spectrum have some types of sensory issues that fall under Sensory Processing Disorder. These two can go hand-in-hand, or one can be seen without the other.
I bought "The Out-of-Sync Child" book a couple months ago and have decided it is time to start educating myself on these sensory issues that Brycen is facing. This is one area that I really don't have much experience and will need to rely entirely on the Occuptional Therapist for guidance. His sensory issues have increased over the last year, and have been very noticeable the last few weeks. We all have sensory issues, but when it starts to affect your daily life and interfere with growth in other areas, then it becomes a whole other obstacle...which is where we are with Brycen right now.
His SLP spoke with me after his speech therapy this morning and said that his grinding is getting worse, which we completely agree with. She noticed when she had him in the swing, he wasn't doing it, but as soon as they transitioned out of the swing, he began grinding. She gave him a chewable toy, but he had no interest in that (just like he doesn't have interest in his chewable Thomas toys at home anymore...unless he is lining them up). So, she attempted to replace the sensory mouth issue with some other sensory input by giving him rubbery balls to play with. She said this helped out a little. The balls they use are actually chew toys for dogs, and that probably sounds crazy to some people, but they are very durable and have both the texture and smoothness that most children with sensory issues crave. The use of these will encourage him to squeeze them in his hand or rub them up and down his arms/legs to gain similar sensory input without the damage to his teeth.
This "talk" led me to call the doctor for yet another order to be faxed for therapy and we now have an Occupational Therapy assessment scheduled for next Wednesday after his speech therapy.
While beginning to read this book, I have found some definite sensory issues Brycen has in the following areas: "overresponsive" to sights, sounds, and tastes, as well as "sensory-seeking" to touch, movement/balance, and body position/muscle control. I'm curious if my understanding of this and from identifying these areas of concern for Brycen are similar to what the assessment will show next week.